Ok, so I have spent the day googling neuropathy and MS. Apparently they define a ms flare as inflammation in the CNS which causes the lesions or scarring. ok, got that. Question is, if blood work, sed rate and crp, show no active inflammation, can you still have MS??
I still have a LOT of visible swelling despite my reportedly good labs. The rheumy is saying neuropathy is the cause. I am also having some other symptoms of MS and my girlfriend who is in private family practice asked if I had an MRI yet to rule out MS. Do I need an MRI if my blood shows no inflammation? I had a very thorough eye exam less than a year ago and all was well there. I work for an optometrist but don't know if MS will always present in the eyes or not. I know the optometrist I work for has referred people out for suspected MS. I will ask him tomorrow afternoon when he is in. Anyone have any thoughts or info?
Opthamologist needs to see you regarding possible MS while you are having symptoms. You can have MS and not have any activity as it can come and go which makes diagnosis difficult.
Yes, they probably should do MRIs of your brain and spine. I'm having a hard time getting that done and I don't understand why. I am going to see my Neurologist tomorrow and ask that question myself. He's done no physical tests just history and exam. My primary swears it can't be MS becaues you just don't get both which we know is not true.
MRIs will show previous lesions though. Try and insist on getting them or at least a damn good reason why they are not doing it.
Michele, know where you are at. I wish I had answers myself.
Michele - see my post to you on your other thread about seeing the rheumy for some info on an MS site. I think MS is kind of difficult to diagnose, but if brain lesions show up on an MRI then that is more definitive. It is a shame that you now have to worry about that on top of everything else, maybe the Lyrica will help and the neuropathy will subside. I had lots of neuropathy in my leg after knee surgery and Neurontin was a lifesaver for me. All my best, PatMicheleb~
What medications are you on? My doctor has just taken me off of Humira after two years due to symptoms simular in MS. Tingling and numbess can often be a side effect of certain biologics so my doctor has taken me off of it to see if this is indeed the problem. Could this be the case for you too?
I too am on Lyrica and it has helped some.
Thanks girls. I found out that yes, you can have normal blood work and still have ms. Blood products can get into the cns but the cns fluid will not cross into the blood stream. So, even if your blood work shows no active inflammation you can still have ms.
I will admit that I am feeling a bit better!!!
My hands are still sore but the swelling and pain are down about 30%! Overall my pain is down as well. A "normal" person might say they feel awful but for us, its all relative, right?!
I also started on high doses of calicum and vit D so not sure if that's helping? This may be tmi here but, I have not had diarrhea in three days!!!! I mean, I have had regular people poops!!!! THis hasn't happen in probably 10 months!!!!! I was so excited, I wanted to show my hubby the poopy I made
I am still shaking and numb on the outside of my hands and feet and could complain about the usual hips, knees, hands, feet, etc but overall, it is improving!!!!! Not sure I am well enough to physically do a happy dance but my mental stability is well much more stable!
Thank you everyone for being there for me when I was so down. Your support has really helped me!!! I can only hope that I and everyone else here continues to have good days! And we will all need to support each other when we don't! Love and hugs to all!
RA and MS do have some similar symptoms. Both diseases are hard to diagnos. An MRI is only one tool used to diagnos MS. There is an outlined protocol that most neuros use when determining whether or not a patient has MS that includes (but is not limited to) MRI, lumbar puncture, physical exam, and VER. I believe an opthomologist is involved when you have lesion/lesions on your optic nerve which would cause you to have vision problems. Not all MS patients have lesions on their optic nerve.Thanks girls. I am still thinking more along the lines of neuropathy instead of ms. The lycria seems to be helping, I felt pretty good yesterday until about 4, than my hands and feet really started hurting. I had taken 2 norcos during the day and took two more right when I got home but the pain was almost intolerable last night. Its seemed ok this morning, its 2 and I have been at work all day and I can just now start feeling that tingly in my feet that I know will turn into PAIN in the next few hours.
I definitely think I need a stronger dose of the lycria and haven't exactly decided what to do yet. I feel as if my head is going to explode with all this medical crap!
Am new to this message board. My nephew has had RA for several years. Two-three years ago he took Humira and about 10 months later he was diagnosed with MS. Has this happened to any of you?
Hi Auntie - and welcome to the board.
Here is an article from Mind, Body and Spirit, the Magazine from the Arthritis Foundation.
| Subject: | Mind, Body, Spirit - January 2007 |
| Date: | 1/18/2007 9:58:51 P.M. Eastern Standard Time |
Do Biologics Cause Multiple Sclerosis?
Q: Ten months ago, after starting Enbrel for RA, I developed muscle weakness and a pins-and-needles sensation in my face. MRI showed lesions on my brain consistent with multiple sclerosis (MS). I had to stop Enbrel, and my doctor has told me MS medications will worsen my arthritis. What can I do?
Answer.
I hope the link works.
I am wondering from reading this thread if some of the meds are to blame. Sorry if what I'm saying is hurtful - I just...it made me wonder.
Pip
If your doctors think you may have MS you should be having an MRI to look for lesions on the brain and a spinal tap. Those are the two main/standard diagnostic tests for MS. Both my aunt and grandmother have MS - thye diagnosed my aunt when it was the only possible solution left. They originally thought she had a brain tumour.Michele, you are right that multiple MRIs may need to be done before you get an answer of MS. What I have found in my search for answers is that you need to talk to different doctors and get those second opinions. My neurologist has been useless in helping me. He pretty much just put me on Bacoflen which helps but not significantly. Then he told me that there was nothing else that he could do.Auntie G~ I was on HUmira for two years before being taken off of it for MS type symptoms. We thought it had helped the problems but that doesn't seem to be the case now. I see a neruologist in Sept. My Rd says it's probable just neruopathy but he's referring me now because we haven't been able to get a handle on the problems as of yet.
Anything you can find on related issues would be appreciated.
Pip; thanks for your post. I've read this stuff before; but it's always helpful to see more.
Thanks for your replies. Pip, I appreciate the article and have printed it to mail to my nephew. I noticed in the answer, though, that the writer was asked if the timing of her MS could be a coincident. My nephew took one injection of Humira and within a day or so he was hospitalized with kidney failure. Before the MS diagnosis was made 8-9 months later, he was in excruciating pain with headaches, sensitivity to light, body weakness all over, etc., etc. So now he has another illness to treat and balance with the RA. I think he could be helped so much by all of you. Your posts are so thoughful and offer a wealth of info to help with these issues.
AuntieG, I am so sorry to hear about your nephew. I hope they get things balanced out for him very quickly.Don't hesitate to give your nephew our web address here. We have several men here and although I don't know of many here with MS support is support. The kind of help we all get here from other's in simular situations is so valuable. Despite well intended family members and friends no one understand like our friends here do. It's great theropy.
We'd love for him to join us. He can just come and look around for a while. He doesn't have to post unless he wants to. Wouldn't hurt to check it out. I'm sure there are other MS message boards available as well that would be helpful. Encourage him to seek out others in his situation.
They have tests today, very easy by blood to see if you have a ms.Lovie, Auntie and anybody else interested -
I'm not trying to be upsetting - please understand I'm coming from a completely different viewpoint than most people with RA. As a person that believes in the infectious etiology of these diseases (Auntie - I'm an APer - we use antibiotics to manage our disease) the idea that suppressing our immune system can bring on more of these diseases scares the bejesus out of me.
I find it appalling in that article that the doc says basically 'couldn't it be coincidence?'. Sure and so is hitting the lotto - I just figure the odds of being hit by both - and Auntie - you said kidney failure within days of injecting the Humira (BTW - did they save his kidneys?) does not smack of coincidence to me. It sounds like cause and effect.
Please tell your nephew to check out www.cpnhelp.org . And for the RA - check out www.roadback.org .
Hugs,
Pip
I'm sorry but I must disagree with you on this, Pip. What I remember from college and my time spent doing research is that the scientific method is defined as the systematic evaluation of tentative explanations against observable evidence. Cause and effect is not nearly as simple as you are trying to make it out to be.....Just because an event preceded another does not prove a causal relationship.Lynn,
Technically, I agree with you. All I have to work with is the little Auntie posted.
Here's my question.
Those of us on AP have the incredibly rare possibilty of Medicine-Induced-Lupus to deal with. But on AP - stop the meds and the MIL goes away. This is not what I'm seeing in posts or in research on the biologics and MS. If you get MS from the biologics - it's here to stay. Why is that? If it was 'just the meds' you'd think stopping the meds would stop the progression or the MS. Unless you lowered the immune system so much that another 'mycoplasma' or some unknown infection triggered an as yet dormant disease and allowed it to run ramphant.
Again, not trying to freak anybody out. I just want an explanation for the differences in reactions to 2 different approved DMARD's.
Buckeye - do you know what blood tests. The Great U didn't do that with me - they were talking about the MRI and the lumbar puncture. Of course, I'm not too keen on the Great U.
Pip
Can't really answer your question Pip without more info and research on the subject. Maybe you would like to answer mine...Do you think there is any validity in this study? If so, how does that effect the whole use of antbiotics to treat RA? Not trying to freak anyone out either...just asking questions.Lynn,
Unfortunately, there is validity to any medical study out there. That is why I try to search for researcher connections to Big Pharma - just trying to see what may be coloring the researchers vision. This study seems to be 'clean' by my standards (scientist that I am ;-) because it was run without interference by the NIC
When you posted the link to Pharmacist.com it gave a link to the JAMA article - which of course gave a lot more info than the blurb.
In reading the study I noticed under results: Items I want to highlight from the study is in blue - my snarky commentary is in fushia.
Cases and controls were similar with respect to age, race, length of GHC enrollment with computerized pharmacy data available, pharmacy co-payment status, parity, hysterectomy status, age at menopause, and ever use of postmenopausal hormones (Table 1). A larger proportion of cases than controls were educated beyond high school, had a higher number of health care visits, were premenopausal, had ever used oral contraceptives, and had filled more than 25 postmenopausal hormone prescriptions. Cases were also more likely than controls to have menarche before age 11, first birth after age 30 years, higher body mass index, a first-degree family history of breast cancer, and higher mammographic breast density. As shown in Table 2, in control participants, increasing cumulative number of prescriptions was associated with older age, white race, longer length of enrollment at GHC, increasing number of health care visits, pharmacy co-payment greater than , age at menarche younger than 11 years, higher body mass index, family history of breast cancer, prior hysterectomy, generally younger age at menopause, ever use of postmenopausal hormones, and higher number of postmenopausal hormone prescriptions. In control participants, both never users and high users of antibiotics were more likely to be postmenopausal than were women with low levels of use. Among breast cancer cases, increasing cumulative number of prescriptions was associated with older age, longer length of enrollment at GHC, increasing number of health care visits, parity, higher body mass index, prior hysterectomy, ever use of postmenopausal hormones, and higher number of postmenopausal hormone prescriptions (Table 2).
Please note they were not comparing apple to apples. The 'cases' had a lot more prescriptions (gee, any AI diseases in there?) etc. I mean everything was not similar from age at mense to number of visits.
Also note: the 2X increase in breast cancer is for women who took over 25 courses of ABX over 17 years! 17 years! And women who took between 1 and 25 courses of ABX in the same time frame (17 years) had a 1.5 increase in BC). So - let me get this right - take ABX ONE TIME in your life and you have almost the same chance of getting BC than a person who took multiple doses???? These guys were stretching here!
Also, under the 'comment' section there was a lot of explaining how they couldn't account for a lot of stuff.
In a subset of study participants with heavy use of macrolide and tetracycline antibiotics, we found no difference in risk of incident breast cancer among women using these antibiotics for acne and/or rosacea (gee, AP is less antibiotics than for acne.) compared with women using these drugs for respiratory tract infections. Because the severity of acne and rosacea can be related to levels of estrogen, unlike most respiratory tract infections, we reasoned that this indication for long-term antibiotic use might be associated with an increased risk of breast cancer. Our results did not support this hypothesis (well, we thought that would be the case but our study tanked on that issue but really, it's not our fault because we had 'limited power' meaning - we don't have enough info to make a strong case) but our study had limited power; the number of women included in the subset was small and the CI was wide. Additional studies (they all say 'additional studies are needed) are needed to further clarify whether indication for antibiotic use is associated with risk of breast cancer. So, basically, we don't know if ABX uses is associated with breast cancer - but hot damn! it made a good blurb on the evening news, didn't it!
The hypothesis that some classes of antibiotics may increase risk of breast cancer is plausible; antibiotics have effects on intestinal microflora and on immune and inflammatory responses.2 (now this makes a hell of a lot of sense) For example, antibiotic use may increase risk of breast cancer by decreasing phytochemical metabolism by intestinal microflora.4, 16 Phytochemicals are hypothesized to play an inhibitory role at several points in the carcinogenesis pathway by modulating enzymes involved in carcinogen and steroid hormone metabolism. (Will everybody PLEASE start taking probiotics even if you don't do AP - he's saying here that there is a hypothesis that says probiotics MAY STOP cancer from starting)16-19 Also, use of tetracycline may be associated with increased production of prostaglandin E2, a hallmark of the inflammatory response, catalyzed by cyclooxygenase 1 and 2.20 (Here he's saying it's associated with inflammation - gee - we're AI, OF COURSE we have inflammation - oh wait, inflammation GOES AWAY on AP - is he talking about a herx???). Overexpression of cyclooxygenase 2 is associated with mammary carcinogenesis, while inhibition of prostaglandins and other inflammatory responses by nonsteroidal anti-inflammatory drugs is associated with a 20% to 40% decreased risk of breast cancer. Here he's saying taking NSAID's cuts inflammation and leads to a 20-40% DECREASED risk of Breast Cancer. 21-24 Although this evidence suggests that antibiotics may be associated with breast cancer, it is also possible that a weakened immune system (either alone (I'm guessing alone) or in conjunction with use of antibiotics) is the biologically relevant basis of this association. Duh!
The strengths of this observational study include the use of population-based cases and controls, the identification and validation of case diagnoses through the Surveillance, Epidemiology, and End Results registry, the ability to include all participants because no direct participant involvement was required, and the use of the GHC pharmacy database to assess antibiotic use in an unbiased manner for cases and controls. Our method of measuring antibiotic use did not capture data for inpatient antibiotic use or antibiotics purchased outside GHC, and could not determine whether prescriptions dispensed were actually used. However, we have no reason to suspect differences between cases and controls, and therefore if any bias exists because of misclassification of antibiotic exposure, we would expect that the current results are biased toward the null. This is saying 'any missing info would push our theory more towards no relationship.
We had missing data for some of the known or suspected risk factors for breast cancer shown in Table 1, and no information for other potential risk factors, such as alcohol use and lactation. Whether this missing information is problematic is difficult to determine; it may have limited our ability to detect confounding. Also, at the highest levels of antibiotic exposure, sample sizes were small and CIs were wide; however, the confidence limits consistently excluded 1. We have some assurance that antibiotic use is not simply a proxy for health care–seeking or mammography-detection bias; the association between cumulative days of antibiotic use and fatal breast cancer was similar to that for the association with incident breast cancer, similar BC for fatal and just 'regular' BC and number of health care visits did not confound (screw up) the association between use of antibiotics and incident breast cancer.
Given that we found an association using relatively straightforward measures of antibiotic use, more detailed analyses including timing of exposure and considering various antibiotic doses might further clarify this association. For example, the amount of antibiotic use at particularly sensitive times in breast development, such as adolescence, pregnancy, or during menopause, may be pertinent. You think??? We were unable to conduct such analyses because there were relatively few women with pharmacy records covering the time span from adolescence or childbearing years through postmenopause. Additionally, it is possible that risks of breast cancer differ between women with long-term use of low-dose antibiotics and those with intermittent use of higher-dose antibiotics. Certainly does if recent research linking mycoplasmas to breast cancer is right.
In summary, we found that increased use of antibiotics was associated with increased risk of incident and fatal breast cancer for a variety of antibiotic classes. It cannot be determined from this study whether the use of antibiotics is causally related to breast cancer, or whether the indication for antibiotic use, overall weakened immune function, or other factors are the pertinent underlying exposures. (Yeah, yeah, more studies are needed). While the implications for clinical practice will not be clear until additional studies are conducted, the results of this study support the continued need for prudent long-term use of antibiotics and the need for further studies of the association between antibiotic use and cancer risk.
This studies are much more applicable.
This says Doxy is an "Efficient treatment of Mycoplasma hyorhinis contamination in MCF-7 breast cancer cells with doxycyclin"
Also, I haven't verified any of the info in this article and don't know who this guy is - but there are some interesting links to cancer and ABX - especially lymphoma (which we are all supposedly at risk for with RA).
http://ezinearticles.com/?Do-Bacteria-Cause-Cancer?&id=6 41484
Lynn, how is this weak and faulty study applicable here? The questions remain. Do biologics weaken an already weakened immune system to the point that another disease pops up? Is it the start of an AI cascade? Again - on AP the MIL goes away. Why doesn't another AI disease do that on the biologics?
Pip
Hi, Pip and Lynn. Just wanted to add that this study was not specific about the types of antibiotics used. Bacteriocide antibiotics, such as the Penicillin family, work by destroying the outer cell wall. What is left? The inside of the cell-- or the cell-wall deficient bacteria (mycoplasma is one particular type of CWD bacteria). This article does not mention the types of antibiotics taken by all study participants. My guess is a lot of bacteriocide antibiotics. The Tetracycline and Macrolide family are both bacteriostatics, they work in a different way, by inhibiting a protein, on the inside of the cell, from duplicating. If Cantwell is right, than it is very possible that bacteriocides (Penicillin family) increase cancer risk-- Because they are killing the outer cell wall and leaving the inside/CWD bacteria to invade the body. Cantwell believes in the mycoplasma/cancer link...
Sorry to interrupt. Take care, Karin